Friday, December 7, 2012

A Beautiful Boy, Taken Too Soon

No parent should have to bury their child. It’s unfair; it’s heartbreaking; and even though I never met Nathan in person, he and his story have made a difference in my life.

When Wendy had her surgery this past October and I was at my breaking point, I saw a status update about sweet Nathan, and I remember thinking that there was no way I could continue to feel sorry for myself because Wendy was not facing anything life-threatening. This was the update: “The official update on Nathan: He has aspiration pneumonia. We were faced with intubation, hospital stay and possibly never being extubated since his neurological state is so fragile or... we go home we treat it the best we can with breathing treatments, antibiotics, and prayer. I at first opted for the first choice, but when it came time to intubate him, I couldn't let them do it knowing he may never get that tube pulled out. I couldn't bring myself to let him spend the rest of his life with a tube down his throat just because I wasn't ready to let go, so we have decided to give it to God. His seizures have returned averaging 1 every 5 minutes, which very well could be because he's sick and theres a chance he will overcome this illness and the seizures will go away again. Even if that chance is slim, we remain hopeful and we ask that all our friends and family remain hopeful as well and that you all pray. I have learned through Nathan's journey that the strongest form of medicine does not come from a doctor or a pharmacy, it comes from prayer... it comes from God, so take a second or two or three throughout your day to pray that Nathan can get through this. ~~ Christina”

Nathan never received a diagnosis. His family received his prognosis based on his MRI, but they did not know why or how it was happening. His doctors assumed it was due to some sort of metabolic disorder or neurodegenerative disease, however, they were told there was so little known about both that they would never get a diagnosis. Nathan suffered from intractable epilepsy, failure to thrive, grand mal seizures, go issues, apnea, and brain atrophy. On November 11, 2012, he died from cardiac arrest. He would have been 22 months old today.

Even though Nathan is no longer here in the physical world, he has definitely left his mark. His family continues to advocate awareness and they are keeping Nathan’s memory alive by sharing his story and I want to personally thank his mother, Christina Earle, for sharing Nathan’s medical history with me, so I could write this blog.